5 Questions for Erinn Baldeschwiler
Baldeschwiler, who was diagnosed with terminal cancer, on the hurdles to accessing legal psilocybin therapy.
In March 2020, Erinn Baldeschwiler was diagnosed with stage four metastatic breast cancer — the cancer had spread throughout her body, and she was given two years to live. She was 48 years old. She underwent immunotherapy, which was working to control the cancer, but within months, her doctors warned her that treatment could lose its efficacy over time, allowing the cancer to progress. Baldeschwiler began seeking out new treatments, including a new immunotherapy drug. She decided she also wanted to try psilocybin-assisted therapy.
The U.S. Food and Drug Administration’s “Right to Try” act allows patients diagnosed with a terminal illness to try “investigational drugs” if they’ve exhausted all other options. The FDA defines “investigational” as a drug that has gone through phase 1 clinical trials, but hasn’t been approved by the agency yet. By that definition, psilocybin should qualify as an investigational drug, but Baldeschwiler’s doctors didn’t know how they could access a legal supply. Her lawyers wrote to the Drug Enforcement Agency in January 2021 for guidance, and the agency replied that “Right to Try” laws don’t create exemptions for scheduled drugs. (Psilocybin is a schedule I drug in the U.S.) In March 2021, Baldeschwiler and another terminally ill patient filed a lawsuit against the DEA, but in January 2022, a federal appeals court judge dismissed the suit saying the court did not have jurisdiction to make a ruling. Later today, activists (including Baldeschwiler) will protest at DEA Headquarters in Arlington, Virginia.
The Microdose spoke with Baldeschwiler in late April about why she and other terminally ill patients are seeking psilocybin therapy, and what it’s been like to wait for replies from government agencies to gain approval.
How did you first hear about psilocybin-assisted therapy as a treatment option, and how did you get involved with advocacy work?
I like to think that the medicine found me. When I was first diagnosed, I went through a series of second opinions. As part of that process, I was interested in integrative approaches as well: could natural medicine or other treatments help me, not just with the cancer itself, but also emotionally and mentally. In that process, I was referred to Advanced Integrative Medical Science Institute, or AIMS. They do ketamine-assisted therapy there as part of their palliative care — they focus on alleviating the mental and emotional stressors.
At AIMS, Dr. [Sunil] Aggarwal reached out to me; he was working on an effort to offer psilocybin-assisted therapy to patients. At the time, I had no idea there were Right to Try laws. I was familiar with magic mushrooms, but my experience was very limited; I’d tried them recreationally in my twenties. Facing a terminal diagnosis, it really shifted my perspective to see that drug as medicine, and to approach mushrooms from a therapeutic perspective as opposed to a good time party atmosphere.
Dr. Aggarwal asked if I would want to be one of the patient petitioners to join his legal effort. And I said sure. It’s advocacy work I believe in. Clearly, it would benefit me, but on a much grander scale, it will hopefully open the door and alleviate the stigmas around these drugs and offer people, especially patients with terminal conditions, a life raft.
People at the end of their lives want as much control as they can over this uncontrollable situation, and want to make their own decisions about treatment. I’m a mom to an 18-year old and 15-year old, and I’m just trying to be a good person, a good role model, to live with dignity, and to die with dignity.
You mentioned ketamine assisted therapy. What has that been like for you?
When we approach these drugs as therapy, and as medicine, it’s so different from other kinds of medicine that are like, “Just take this pill.” The practitioners really looked at me holistically — What’s your history? What medicines are you on? Is this safe for you? What’s your intention in taking these drugs? There was a therapist who sat with me, taking notes of whatever I said; what I liked about it is that the experience allowed the medicine to work through me, and to let things come up naturally. I had two sessions, and I walked away from them feeling like I’m on the right path, that we’re connected to everything and each other. I felt like I was in a space of love and beauty and peace, one that held me and released any kind of fear. That’s just my experience. I've heard other people say, “I have cancer in my colon, and I did a deep dive into my colon, and then I came out of it and I felt great.” Everyone has a unique experience and that's what's beautiful.
You’ve been seeking psilocybin-assisted therapy for nearly a year and a half now through a labyrinth of requests and lawsuits and now, appeals. What does it feel like to be in this position?
It’s all just a colossal thorn in my side. It’s so frustrating — in the DEA lawsuit, it feels like the court went after the technicality of not having jurisdiction so they wouldn't even hear the case. And it took months for them to decide that — it feels like a stall tactic. The Right to Try law is on the books. What’s the point of these laws if there’s no accountability behind them?
In February, our team filed for a waiver that would allow my doctor to access the medicine for me. According to my lawyer, if they respond, I could have the medicine in days. They have processes in place that allow for these things, but still, we’ve heard nothing. It seems like that could be long and drawn out as well, and I’m sure I’ll be dead by the time that comes to pass.
Court rulings and legal changes often happen on the order of months or even years — and as a terminally ill person, time is not a luxury you have. Many people have tried to circumvent the legality of psychedelic therapy by consulting with people working underground or working abroad. Have you considered doing that?
Patients should not have to turn to the underground, or to leave the country to get this medicine, especially with existing laws in place. There are a lot of resources out there for people who aren't able to go to their doctor and get treatment, and there’s also a lot of decriminalization happening around the country. But it's not for everybody — some people are like, “Nope, I am not going to break the law. I don't want to get in trouble.” And not that I do want to get in trouble, but I’ll say that I'm going to pursue my own avenues and do what I need to do to take care of myself in the best way that I can. At this point, I'm literally dying. Like, what are they going to do to me?
You live in Washington state, and the May 9 protest is in Washington DC — that’s a long way. How’d you make the decision to attend, and what message do you hope to send?
When Kathryn [Tucker, a lawyer working on Baldeschwiler’s case] first told me about it, I was like, “Yeah, I’m not going.” I’m all about people raising and sharing their voice, but I personally have never, ever participated in any kind of public protest. But a few days ago, Dr. Aggarwal reached out and extended a personal invitation, and it made me think twice about it. I mean, this is it, right? This is probably my first and last time to do this. After I talked to my nurse and she agreed to go with me, I decided I’d go.
I think my message is: get out of the way, DEA. By blocking and denying a medicine that falls under the letter and law of the land, you're making a choice for patients. You're hurting us; you're making things worse as people are in pain and suffering.
This interview has been edited and condensed for clarity and length.